Tag Archives: Chronic Disease

A Revelation

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handwritingI’ve been cleaning out my office, getting rid of old papers and transcribing some of the hundreds of handwritten pages I had stored away into my word processor. Writing has always been my catharsis, my therapy. And I’ve come to realize just how much as I go through the stack of pages and numerous journals.

Reading these pages have brought back memories, and I suppose I could also say, have wrung back memories as well. Sometimes it hurts to remember. Sometimes remembering brings back the pain, emotional and physical.

I have always known that I’d had RA for some time before I was officially diagnosed in 2004. I knew I’d been sick, tired, listless, and pain-ridden for several years before my current rheumatologist finally produced that Aha! moment, when I finally knew what I was up against. Prior to that moment of revelation,  I’d blamed it all on being a busy mom at home and a busy nurse at work.

But my assumption was that it had been only a couple of years. It couldn’t have gone on for more than that without a proper diagnosis, could it? Without my searching for and demanding an answer as to what ailed me.

Imagine my surprise when I found a letter I’d written to my husband who was out at sea in 1995. By the looks of it, I never mailed it. I probably meant to, but was so busy I forgot. Or maybe I changed my mind and decided not to burden him with my tale of woe. More than likely, I felt so much better after pouring out my angst onto the paper that I didn’t need to.

What I wrote astounded me in that apparently, I’d had RA back then. I had it and didn’t know it. And neither did my doctors because when I started the letter I was sitting in the internist’s waiting room, waiting to find out my lab results regarding my “inflammatory process.” Waiting to find out what was wrong with me. In it I write:

I tried going off my Prednisone. I hate being on steroids but my hands became very painful so I went back on it. But my right hand is worse, My grip is weak because it hurts when I try to grip things like when wringing the mop. Yesterday, I met a new doctor at work and he shook my hand. To me, it seemed so hard, I saw stars and it hurt for hours. . . .  My hands getting worse is very depressing.

I go on to describe a nightmare I had about something drastic happening to my left hand. I will not subject you to the details. Suffice to say, it was so horrible that it yanked me terrified out of my sleep and I could not go back to sleep for the rest of that night.

It just goes to show how RA can affect our subconscious, as well as our body. And unless I come across other writings, that describe my symptoms so accurately, from before the summer of ’95, it would appear that I have had RA not for twelve or so years, but for at least twenty-one.

In my last post, I mentioned how my lab numbers are now normal, after a supposed twelve-year span. But with this new/old information, I’m wondering if perhaps, like my kids, RA has reached its maturity and has moved away.

One can only hope.

BTW, my left hand is just fine. So far.

hand

My Buddy

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The culture I come from has a special term for someone with whom you can identify. A someone who can commiserate with you, who can empathize, who can feel what you feel, almost.

The strictest translated definition of the word is co-parent. It describes the person who baptizes your child and becomes their godmother or godfather. With this process they become your comadre or compadre.

In casual use, in the slang form perhaps, it means something much richer. Your best buddy is your comadre or your compadre. You do not need to have a child needing baptism to acquire a compa.

This insightful post by J.G. Chayko made me stop to think about who I have to share my RA trials and tribulations with face to face. Sharing in the sense that they don’t just hear me grouse, but totally get it.

Not my husband, who at first gave me a wide berth, sailor that he is. He thought, since I was in so much pain, that his backing away and not placing demands on me of any kind was the kindest thing to do.

It wasn’t. And though he is now supportive to the nth degree, he cannot know what I feel.

Not my children from whom I hid my disease with a passion for many years. I did not want to let them see me sweat. Must be strong, must be strong for those whom I brought into the world and depended on me.

Now I educate them as to what RA can do when it decides to do it.

Not my coworkers who absolutely depended on me, especially when the buck stopped with me. My pride wouldn’t allow me to let them know how much pain I was in, though I did eventually enlist two of them to help me with Humira injections to my arms, an area that I could not reach myself.

This problem ended when I retired from nursing. Sadly, but I knew it was time to pass the baton. My oldest son is now the R.N. in the family. Though he and his wife, a pharmacist, can relate to the theory of RA and its treatment modalities, they cannot know what it is really like.

So I closed my eyes and searched. Who was there for me? Who was my compa?

And it hit me like a lightning bolt. Of course! I’d just seen him today when we’d put our heads together once again and shared war stories about ways to defeat and one-up RA. We do that every two months, more frequently if RA is being more horrid than usual to me.

He is there for me, always. I can call. I can email. I can visit. My rheumatologist is my compa, for he has RA and he knows.

The Cost of Being Well

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I’m still debating the eye thing.

There was so much coming at me so quickly that I focused on just one bit of info. What size needle gauge? (30) What immediate effect will it have on my vision? (“Some patients report seeing bubbly for few minutes.”)

I said I had to coordinate with someone to drive me, at least for the first one. It’s not the distance I said, it’s the traffic. You need more than two good eyes some days.

But what I really should have asked is:

What is the med?
What are its side effects?
What is the cost?
How much will insurance cover?
And: Is it experimental?

That’s why it’s recommended that you take someone with you when you go to the doctor. I’m everyone’s patient advocate for my family, but who is mine? I have the luxury of working at home. I work at will, when I have the will. The rest of my family doesn’t, they have to show up at the office every day. And anyway, it would be like the blind leading the blind.

Of course there is such a thing as moral support and I know I won’t have to go alone if I don’t want to. But in the end, all I could think of during my time with the doctor was: A needle in my eye? Are you sh*****g me?

All this got me to thinking of drugs and medicine in general. Things are changing a bit. Insurances now have to specify how much goes toward your care and how much to running their company. But what about the pharmaceuticals? Who’s yanking at those reins?

AARP Bulletin (Jan/Feb 2015) has a good article on specialty drugs. The first on the list is Humira. According to their chart, it had 5.4 billion in sales for 2013. Billions. I can’t even comprehend one million, let alone a billion.

When I was on it back in ’06 and ’07, the pharmacy said it cost $1,500 for two shots. My prescription was for an injection every two weeks. So every month I doled out a co-pay of $250. I have no idea what it costs now, but something tells me it’s not less.

A while back my ophthalmologist put me on Restasis to treat dry eyes. When I went to pick it up at the pharmacy, I almost lost my cookies. My co-pay was forty bucks, but the actual cost of the prescription for one month’s worth was $367. You’d think the sting you feel when you use the drops would be insult enough.

I won’t even spend that much on a quality leather purse, maybe at a nice resort hotel for a couple of nights, but geez, louise, how can anybody afford to be sick?

Sick on a chronic basis. Or even, sick on an acute basis. A few weeks ago, I got the insurance statement for my five-day hospital stay in November. If the numbers are true, I could have bought a very nice car with that amount.

 

My Daily Bucket

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photo (7)When I arrived to care for my toddler granddaughter a month ago, I was presented with this bucket. It bears a butterfly made with her footprints. “I will put it in my office,” I said, immediately wondering what kind of plant I could put in it once I returned home.

Meantime, I placed it on the dresser in my room, and it occurred to me that it was the perfect place to hold my pill bottles. Up and away from curious little fingers.

I’ve reached a point in my life where I don’t have to worry about where I place my pills. Though they each have a certain “home” in my house, it mattered not where they went. Now, I have to be conscious about the whereabouts of my concoctions.

What’s in the bucket? Prednisone, my frenemy, 2.5 mg once a day. I’d weaned off, but after a week my hands were hurting so bad I had to cave and go back on it for the duration. When I was young and raising my children, I had no idea the workout my hands took. Now every twinge reminds me that caring for a toddler is manual labor. Though with great and bountiful rewards.

There are days where my hands still hurt, like today, and my wrists as well. Foreseeing that, I packed a wrist brace, which I’ve had to use several times. I wear it at night and in the morning the pain is gone or diminished. Perhaps it’s mind over matter, a placebo effect, but I’m not questioning its efficacy.

Also in the bucket is Folic Acid, the rescue drug for Methotrexate. Nuff said. I take MTX on Wednesdays so it doesn’t rate a place inside the bucket.

There’s my eye vitamins, prescribed by my ophthalmologist. They contain Vitamin C, Vitamin E, Zinc Oxide, Copper, Lutein and Zeaxanthin. I’m supposed to take them twice a day, but usually take it once. They are mostly prophylactic. My “apple” a day, you might say. Or maybe, the apple of my eye.

There’s Vitamins B1, B6 and B12, prescribed by my PCP to treat shingles pain. It is now almost 14 months since I had shingles, but the pain is not completely gone. On a scale of 1 to 10, it is a one, sometimes a two. It depends on how that part of me is affected by my activities. But it took its sweet time climbing down that ladder. I was scared  to death worried it would be a 10+ forever.

Also in the bucket is acetaminophen (the ingredient in Tylenol). Since Naproxen and/or Plaquenil gave me tinnitus I have to stay off NSAIDS (non-steroidal anti-inflammatory drugs).  So, hello, acetaminophen, which I take once or twice a day. Some days none at all. The good days. The tinnitus is practically gone. I only hear it when I concentrate on it. And I don’t have much time to concentrate on it right now.

And of course, Vitamin D3 and calcium  supplements, which also contain D3. I’ve been on Vitamin D since 2006 and I give it much credit for my turnaround that began in 2009. I know it was a mix of things that allowed me to rise to the surface and breathe again, but Vitamin D was a major factor. I take 2000 IU’s a day. Each calcium tab gives me another 500 IU’s, so I end up with 3000 on most days.

It would be nice to say that is the extent of my personal pharmacy, but no. photo (2)

In a large Baggie in my unmentionable’s drawer are:

Gabapentin, in case of more severe shingles nerve pain,

the MTX,

Naproxen, if bursitis rears its ugly head again, I will have no choice but to bite the bullet,

the Fosamax, which I’ve yet to start. I know, I’m bad,

and most important of all, cyclobenzaprine (generic for Flexeril, a muscle relaxer). My rheumy prescribes it for sleep. And we know if we don’t sleep, our pain is that much worse. I take 5 mg nightly and when it’s been a painful day I take ten.

No longer in the bucket, its empty husk having joined the inhabitants of Baggie World, is Acyclovir, the antiviral my rheumatologist ordered for a year to prevent a shingles recurrence, Lord forbid. I ran out a few days ago, but I’ve crossed the year mark and now I cross my fingers. We shall see what, if anything, develops.